What to expect during the diagnosis and treatment process
While the exact length of a visit to the GUIDE clinic varies from person to person, expect to spend approximately 2-3 hours at the clinic.
You will see several different providers during your visit. Because of the complex nature of DSD and CAH, your child will benefit most from a team approach to care. Rather than multiple appointments in different locations, at the GUIDE clinic, you can see all the specialists you need in one place.
It takes many disciplines to come up with a plan of care specific to your child. On a day-to-day basis, these team members work in other specialties throughout the hospital. For your family’s convenience, we have one GUIDE clinic appointment where all the specialists come to you. This helps you get the most comprehensive diagnosis and plan of care, as well as answer your questions and concerns.
If additional testing is necessary, it can often be done during your visit.
Here are some questions it might be helpful to think about before your first appointment. You may want to write down your thoughts and questions before you come.
- When and how were you informed of your child’s condition?
- What is your current understanding of what they have and potential treatments?
- Have you gotten connected to any online or in-person support groups?
- Will your child be cared for by others that need to be aware of their condition?
- What does your family know about your child?